World Arthritis Day wrap up and state of play – October 2018

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This is a catchup post, mostly for me to look back on and know where everything is up to.  My memory is pretty horrible, and this blog has often served as a reference point for me.  To remind me what happened when.  So here goes…

I had an endoscopy last week. I have a follow up appointment next week, but initial pathology looks clear!  No eosinophils in my esophagus, or stomach!That means that a diet that is wheat and dairy free is fine for me, in terms of eosinophilic Esophagitis.  Which is very restrictive still, but better than I have been. I will challenge dairy next time.  Prior to this endoscopy I was strict on excluding dairy for two weeks, but I’d eaten a little, here and there, in the previous six weeks.  Next time I’m due for a gastroscopy I will eat lots of dairy, to see if there are eosinophils.

Given how many endoscopies I’ve had, the severity of my symptoms and the restrictiveness of the diets I’ve followed for the last three years, this is great news.  To reduce the ‘problem’ foods down to wheat and dairy, is fantastic.  If I exclude these, my esophagus can potentially heal.  I have a lot of damage there, a very corrugated oesophagus.  There are also signs of reflux disease.  I’ll need to discuss the implications of that with my gastroenterologist next week.

Last Friday was World Arthritis Day.  I travelled to Sydney to appear on Today Extra to talk about arthritis with the National Co-ordinator of CreakyJoints Australia with whom I’ve been doing a lot of work to raise awareness and improve the lives of people living with arthritis.  The trip was amazing, but I am spent.  I arrived home on Friday afternoon, and basically collapsed. I don’t know where the days have gone.

Saturday was complete knock down.  And I mean complete. Sunday I did some dishes, and tried to get a few groceries.  That knocked me back to couch.  Monday I tried to clean up a little, but I was soon back on the couch. I did manage a 500 metre walk, which I am proud of. Today I will do it again.  Exercise is key for me to get upright again.  When you’re lying down, it only takes 24 hours to start losing muscle mass and strength.  Each day that I don’t stretch and walk makes it harder to start again.

So I make this a priority.  I had to get a friend to pick up the Chicklet from work, because I was unable to drive yesterday evening.  It’s frustrating.  And I’m concerned about how I’ll fare over the next few weeks. I have a weekend in Sydney for the Healthevoices conference on the 9th of November and the following weekend I go to Melbourne for a CreakyJoints conference.

It’s a lot.  I’ll barely be recovered from Sydney before I need to go to Melbourne.  I don’t’ want to increase my prednisone, because I am finally down to 10mg!  I thought 10mg was impossible.  Obviously the taper is contributing to my pain as well, and I am going to stay here at 10mg until after the conferences are over.

All my doctors will be very pleased that I’ve gotten this far.  And the reason why?  Methotrexate.  The side effects of methotrexate are nothing compared to the rheumatoid arthritis symptoms. I love mtx, because it makes a huge difference.  I’m walking 1.6 km most days, and I’ve reduced my prednisone by 5mg.  My rheumatologist will tell me this is the placebo effect, but he’s wrong. He’ll have to eat his words, especially when he sees that my last lot of blood work showed a positive RF.  Anti-CCP is the more specific test, but a positive RF will help prove to him that I do, infact, have RA.  And it’s a monster.  But methotrexate is helping me beat it, and I am looking to add in a biological as soon as I’ve reached the highest dose of methotrexate that I can tolerate.

In the past methotrexate has caused major depression and a psychotic break. It is a very dangerous drug for me, but in the past I had PMDD.  Since I had my total hysterectomy and oophorectomy I no longer suffer hormonal depression, and so methotrexate also doesn’t affect my moods to the extent it once did.

Victory. The hysterectomy was an absolute nightmare, I have to take solace in the benefits.  And this is a huge benefit.

The Chicklet and Gamerboy went back to school yesterday. Both are

having issues, but Gamerboy is gritting his teeth and focusing on his last term at school. Next year he will go to university and study astrophysics.  All his energy is focused on that.

The Chicklet is having bigger problems, all stemming from the girl who was her friend who falsely told the school that the Chicklet was plotting to KILL a teacher. The school crucified her without giving her a chance to tell her story, and called me in and it was weeks of hell while we unravelled the situation.  The girl at the centre of it all was lying, and continues to lie.  She and her mother stared the Chicklet down at the local shopping centre leaving the Chicklet in hysterics. She is demanding the opportunity to talk to this girl with teachers present and clear her name.  I am behind her 100%. What these people did to my girl was horrific and I will back her all the way.

She wants to drop out of school because of this, and I can’t let that happen.  None of this is her fault, she called a teacher a name in a private text conversation. And this girl took that and concocted a story of epic proportions that the school took as fact.  I’d love it if they just apologised, but that won’t happen.  Added to this, several teachers have commented on the Chicklet’s IBS and anxiety, making snide remarks such as “You don’t LOOK that sick” and “funny how you’re only sick during school time” which makes me bristle for a multitude of reasons.  The whole staff of that school needs some training in chronic illness and invisible illness.  I’d be happy to provide them with some pointers!

The house is a sty.   I don’t have the energy to clean, but I can’t call in a cleaner without doing some tidying. So I will do a little each day, and the kids will do a little too.  They aren’t great at keeping house, but they can cook dinner and clean up the kitchen.  I guess I can be grateful for that.

All my joints feel like they are broken. My lumbar spine is the worst, as always.  I am using my old tens machine on my spine and it does help. At least while the tens is working. There is no longer term benefit for me.  But the relief is good.  I alternate with heat.  I’m spending a lot of time under my heated throw, doing a small job, resting for a long while, then doing another small job.  Just running the kids back and forth from school is enough, its exhausting.

There is LOT that needs doing. It will have to wait.  I need to register the car, that can’t wait.  Not past tomorrow, anyway.  But it can wait until then.  I need to organise x-rays and bone density scans.  I’ve been meaning to do that for several months, but now its getting critical. MUST organise that.

My bloods came back, my C4 is low and my C1q is low/normal.  That might not be enough for my immunologist, but given that my allergies are out of control, its time I went to see her again too.

I still get stomach pain regularly. And its bad stomach pain…double you over stuff.  I’m logging everything I eat, and noting whether there is pain afterward.  The pain starts within 30 minutes of eating, so I’m hoping I can nail down specific triggers. So far rice is suspect, along with peanut butter and gluten free bread.  I will re-challenge those.

Safe foods include boiled eggs, pink lady apples, mandarins, tinned pineapple, chicken, sweet potato, potato, broccoli and beef.  That’s what my diet consists of right now.  I tend to eat whole foods, and meals consist of single foods e.g. one or two boiled eggs for breakfast, depending on how hungry I am.  Or one or two pink lady apples.   Each food needs to be tested individually.  Eventually I’ll have a list of safe foods. I hope.

My father is home from hospital, but life is hard for them. My mother is taking on a caring role and its more than she can physically handle.  I help a little, but I’m not capable of much.  I provide a shoulder and a venting post.  They are both realising that life has changed, chronic illness has stepped in and out of their lives, but now its here to stay, and life won’t ever be as simple again. I know my way around the health system a little better than they do, so that’s something I can help with.  But the health system is generally pretty terrible at dealing with chronic conditions, as I think we all know very well!

So, I think that’s it.   Oh, I’m working on my awareness bracelets.  That has to take a back seat, once again.  And I’m working on a book.   A very practical guide to making life easier with a degenerative, painful, chronic illness.  My other book is also in the works, but its harder to write.  So I’m doing the ‘easy’ one first. I’m about half way there, and its my stress relief and happy place, given that most physical things are far out of reach right now.

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